Coronavirus (COVID-19) - dementia and COVID-19: action plan

Living Well At Home

"People need targeted support & access to a range of services to enable them to live well at home, like physiotherapist support"

"Technology has proved essential during these unprecedented times. Technology has a huge part to play in living well with dementia."

"I think you learn about a person when you talk to them face to face; I want to meet people and enjoy their company"

"I've lost confidence. I want to go out independently but I can't. I want to do the right thing but I don't know what the right thing is, so I'd rather do nothing than get it wrong."

"I didn't realise how much I depended on day services until they stopped, I am sure I would have been able to keep my husband at home longer with regular periods of respite for me and support for him"

• Feeling safe and secure in our own homes is important for everyone – and is especially so for people living with dementia who may experience a sense of loss and of vulnerability as their dementia progresses.
• During the pandemic the importance of feeling safe at home, feeling connected and visible and knowing and relying on family, carers neighbours and close community has been highlighted. Having a home that is well designed and adapted to suit changing needs is part of what enables people to stay connected to friends, neighbours and community. It is also essential that people with dementia get good quality integrated home care following eligibility assessment.
• Whilst we want to continue to help as many people with dementia as possible to live a good quality of life in their own home for as long as possible we are also aware of the risks of social isolation and loneliness for people with dementia who live alone without any immediate family nearby. Because of restrictions to protect the public from the virus, they have been unable to benefit from the kind of community supports, day supports and simple daily connections with community life that they would normally have.
• From registered day services to community choirs, being connected with others and being supported to live well were consistent themes from the engagement events. Whilst therapeutic interventions and support to manage the illness were identified as being vital, the connections with others and the opportunities to share experiences of dementia and beyond were what people craved most. Many people with a diagnosis expressed a lack of purpose and lack of motivation – with impact on mobility and other parts of physical health and wellbeing. Self-Directed Support (SDS) was identified as an important resource to both reactivate community services and to enable people to have increased choice and personalised support.
• Some service providers have struggled to re-mobilise services despite COVID-specific risk assessments being prepared and communicated with Public Health Protection teams. This has exacerbated carer stress as well as increased isolation for people living with dementia.
• We also know that families of loved ones with dementia have been profoundly affected by loss and grief during the pandemic. The Scottish Government's Mental Health COVID-19 plan sets out how we will work with colleagues across Scottish Government and current providers of bereavement support, to explore the need for additional screening, outreach, and support for the mental health of those who have lost loved ones during the COVID-19 pandemic and we will support this commitment for dementia.

Respite and day care support

• Respite and day care support are important to enable unpaid carers to have a break from caring; and to provide opportunities for enjoyable and meaningful activities for people with support need – and are important and valued parts of overall individual, family and community resilience.
• We know that access to respite and day care has been a challenge for many supported people and their unpaid carers throughout the pandemic. While a growing number of services are open, the need for physical distancing in buildings-based services has reduced capacity.
• Day services guidance is in place and services can reopen subject to local approval to re-open. The Scottish Government continues to encourage local dialogue around reopening and approvals and to emphasise the importance of day services for people's wellbeing
• Because reopened services are operating at reduced capacity to enable distancing, our guidance emphasises the importance of dialogue with supported people and carers about alternative day support alongside traditional day centres. We are also emphasising people's right to use self-directed support options to access alternatives.
• Feedback from the sector is that an increasing number of day services have reopened – with reduced capacity to enable distancing. The significant proportion of day services that remain closed report a variety of reasons. The majority are running alternative day services in place of or alongside day centres. Demand remains high and reopened services are still running at reduced capacity.
• We have been working with partners to ensure carers have access to short breaks that are suitable for those who are self-isolating and physical distancing though the £3 million voluntary sector Short Breaks Fund. We have expanded the fund this year with an extra £255,000 for the Time to Live Fund micro-grants scheme.
• Over the coming months, we hope to see more day centres reopening as regular COVID testing is expanded among staff and vaccinations are rolled out to staff and people using services.

The nature and impact of digital exclusion

During the engagement process, we heard that whilst value was placed on Near Me for clinical consultations and Zoom and other platforms for social connections described as a lifeline during the pandemic, there was a universal message that digital technology is a tool, an enhancer and is not a replacement for human connection. Broadband connectivity and speed were also issues for some.

There was also a strong message that digital is not for everyone: people with dementia living alone had often not been seen by friends or fellow group members simply because they could not work the technology and broadband quality in some parts of Scotland remains a challenge, especially when using cameras to connect with and see friends.

For family carers navigating service through digital, the disconnect of organisational systems had proved time consuming and frustrating, with people having to relate the same information several times to different services/agencies.

The Scottish Government has been consulting on a plan for a refreshed digital strategy. It will be a catalyst for bringing together the digital transformation ambitions throughout all sectors in Scotland.

The Scottish Government has been taking further action this year to support older and vulnerable people at home:

Housing

• The Scottish Government champions independent living for older and disabled people within their community. Living in the right home with the right support can be the key to enabling people to live safely and independently at home.
• During the COVID-19 pandemic we are continuing to engage with stakeholders to ensure older and disabled people have access to help and advice needed to enable them to continue to live independently. We have also worked across government to ensure Registered Social Landlords and housing support providers have access to suitable Personal Protective Equipment (PPE) to enable them to safely deliver services to vulnerable tenants.
• Scottish Government has published guidance for care at home, housing support and sheltered housing. This supports measures to prevent and prepare for infection in people receiving care at home or housing support.
• The Scottish Federation of Housing Associations (SFHA) produced a guide to support social landlords with restarting sheltered housing services which were paused during the lockdown phase of the pandemic. The Social Housing Resilience Group produced a guide which covers the re-opening of housing offices and the resumption of services delivered to tenants in their homes. This was updated on 23 November 2020 in line with the latest SG guidance on the current level 4 restrictions: COVID-19 Briefings (sfha.co.uk)

Fuel Poverty

• We recognise the positive health implications of being able to stay warm at home. The Scottish Government has therefore put in place a range of support for those struggling with their energy costs at this time.
• This includes continued support for Home Energy Scotland, as well as support for a range of projects via the Immediate Priorities, Wellbeing and Supporting Communities Funds. Our energy efficiency schemes also continue to provide targeted support to make homes warmer and cheaper to heat.

Commitment 6: We will work with health and social care partnerships to enhance integrated and co-ordinated support for people with dementia to live well and safely in their own home, connected to their local community, for as long as possible and to minimise hospital admissions – and do more to support those with dementia who live alone. As part of this we will spread learning from the local whole-system dementia care approach being tested in Inverclyde.

Commitment 7: We will implement the commitment in the Mental Health Recovery and Transition Plan to support and improve older people's mental health and wellbeing for people with dementia and their carers, with particular attention to COVID-related issues such as trauma (and delayed trauma), bereavement and depression.

Commitment 8: We will work with health and social care partnerships to support the physical rehabilitation for people with dementia and their carers through implementation of the Framework for Supporting People through Recovery and Rehabilitation and we will integrate that response with the national dementia Allied Health Professionals' Framework Connecting People, Connecting Support.

Commitment 9: We will continue to support and monitor the re-opening of Adult Day services for the benefit of people with dementia and their carers. We will also continue to expand and monitor the uptake of access to Self-Directed Support by people with dementia.

Commitment 10: We will continue to maximise the impact of telecare and address digital exclusion for people with dementia and their carers.